on the road with our son Charlie in autismland

I would wager that Charlie understands the lion's share of what he hears. Jim and I have no direct, actual, literal, "scientific" sort of evidence for this. But we do really feel that, for all we don't (yet; always) know why Charlie does what he does and says what he says, we do know Charlie very, very well, and he us. (Does anyone every truly understand and know why another individuals does and say what she or he says?)

A student who was struggling to speak a contemporary foreign language once noted to me that his instructor had told him that he needed to "think in [the contemporary foreign language]." This advice, while making sense, also made the student something more than exasperated: Here he was trying to learn the basics of a foreign language, only to be told that he needed to start by thinking in a language that he was less than even well-versed in.

On the one hand, I see Jim and me as my student, doing our best to speak and think in a foreign language---Charlie's communications, verbal and otherwise---and knowing that we're at the very tip of the iceberg of understanding. And on the other hand, Charlie is the student who hears some other language spoken copiously all around him, who tries so very hard to speak in it and use it and everything gets all flubbed out, no matter how hard he tries to "think in" the language that Jim and I and all of Charlie's teachers and therapists and others use. Either way, one party in the exchange finds himself or herself at a severe disadvantage, equipped with only a rudimentary vocabulary and fumbling to use those few words to express the full range of thoughts, needs, ideas.

So, while Charlie understands what it means when "no" is said to him, and says "no" himself at moments when he clearly does not want to do something, sometimes (as I've noted) he means something more like "maybe" or "give me a moment, I need to think about it"---even, as I've been thinking more recently, "not right now but hold on, I need more time to process what you're saying to me." When Charlie says "yes," people tend to proffer some object or action, and it can be too late for Charlie to say he really doesn't what such. "No" defers and delays, while "yes" often has the not-always-desired result of bringing it all on.

And lately, too, we've gotten a renewed sense of how much power there is in one word, whether said or heard by Charlie. He had a good day at school but, in the very last minutes, started asking about leaving and things escalated and he very quickly got very upset. He was able to stay in his seat and get himself calmed down, which I thought, and told his teacher when she related this to me after school, commendable.

Monday had gotten off to an unusual start. I drove Charlie to school and then, in the interest of making it to work at a reasonable time, my dad had also come to wait with Charlie till school started while I drove off. All went smoothly except that, as it occurred to me in reflecting on things, Charlie may well not have been too sure who was going to be picking him up. We had of course told him about this arrangement but it was definitely outside the usual routine.

And then, too, Charlie had woken up at 4.51am. Gotten dressed, put on his shoes, opened the door to go out. I said to him that it was really early and it was great he was already to go, we did need to wait. That was all and Charlie spent an hour pacing and sitting on a roller chair and sliding around. Around 6.15am I noticed him sitting on the blue couch and then saw him slouched over and sound asleep. He did wake up just around the time to drive him to school and walk himself into the car, but if his mind felt as tired as mine did at 2.45pm, no wonder something had happened.

In that early morning hour---5-6 am---I was careful only to tell Charlie once that he had a couple of hours to wait until we got in the white car and headed to school. Charlie's words can be his own worst enemy and it also doesn't help for him to hear something told to him over and over, like a constant reminder that he's gotten up quite early and has to wait.

Rom Houben is a Belgian man who, after being paralyzed in a car accident in 1983, was thought to be in a "vegetative state" for 23 years. As noted in yesterday's Guardian, he could hear and understand everything said around him, but was unable to say a word or otherwise indicate that he was fully conscious. Then, three years ago, neurologist Steven Laurys used a "state-of-the-art scanning system" and "found to his amazement that [Houben's] brain was functioning almost normally." Houben can now communicate with one finger and a special computer touchscreen on his wheelchair. "'I screamed, but there was nothing to hear,'" he has typed on his keyboard.

Of course Charlie's situation is very different from Houben's. But the underlying theme of a person understanding so very much more than their body enables them to communicate---we think about this all the time in our interactions with Charlie. And that thought changes everything.

Comments

"But the underlying theme of a person understanding so very much more than their body enables them to communicate---we think about this all the time in our interactions with Charlie"

This is something to remember always for us too. Great post - scary story from the guardian.

Charlie did excellently to be able to stay in his chair and calm himself, especially after waking so early. I have all kinds of weird sensory things going on if I'm sleep deprived, I'm sure this must be more so for Charlie and others. (as it happens, Dimitri woke at 4am today, so a little extra understanding and sensitivity may be required)

"But the underlying theme of a person understanding so very much more than their body enables them to communicate---we think about this all the time in our interactions with Charlie. And that thought changes everything."

It's always been there with G, too. Early on, before he started talking, we caught glimpses of the evidence. Even now, while he talks, he struggles noticably with every sentence involving a significant idea. It is almost certain that he understands more than he is able to convey, yet how much more and how he understands it remains unclear to us.

And yes, when you approach it as assuming at least some of what you are saying is registering without direct, obvious feedback it certainly does change a LOT of things.

P.S. It's been helpful that we've worked to learn to think in his language, too. I suspect I've always been using a distant dialect of it anyway. ;)

When Nat was little, and even sometimes now, I can't help but assume that he *is* the way he presents. But then something will remind me that I truly do not know what he knows and usually that something (someone) is Nat.

I found this article interesting. It was in our news a short time ago. It's called "learning to talk, changes how we hear". It's the start of the research, but it's still very interesting.

My little one gets up some days at 4 and by end of day is tired. He knows to stay in bed after a trip to the bathroom and play with his toys until the alarm goes off at 6. I make certain the school knows as well. There have been no excessive behaviours, but atleast if he's tired at the end of the day they know why.

Kristina, I'd like to thank you once again for sharing your life with us. My child is still young (not quite four), but I've also noticed that sometimes, words can be his worst enemy. (Ironic in some ways, when we devote so much time and energy into hoping/praying/wishing that they begin to speak!) "No" means "never", or "not ever" to him, and even saying "no, not right now" can trigger intense emotions because he can't differentiate between the sense of "you can't have x right now, but you can soon" or "you can't ever have x". Reading your post has given me a new perspective on the problem this morning. (We have an early riser too- E is often up by 5:30, which can be exhausting when combined with his baby sister's teething:-( )

It saddens me when I think that parents such as those who have written comments here, and you and I, are exceptions rather than the rule. Too many assume that lack of language/universally understood communication equates to lack of awarenesss or lack of engagement. I think that is where we (as a society) fail our children (no matter how old or how young).

Of course, you know me, I think that EVERY action is a communication...

Adam understands. I have to watch what I say. I never doubt for a moment that he's not taking everything in, even when it appears he is occupied with something else. I know he understands by how he reacts, and then how he also listens when I think he's not and does something I ask him to. There are thousands of ineffable signs that I know that he knows. And what's important is to make "the least dangerous assumption."

Well observed, Kristina. There's so much more to words than the words, no matter who you are. I even say "no" sometimes when all I'm really doing is delaying my "real" answer until I've processed the question.

I wonder why he's waking so early. Does he sleep heavily? TH does, but he also says that he wakes often in the night and worries, and I know that when he's sleeping, he moves constantly. Charlie must still very much be processing these changes still. I wonder if the early waking means that he does *like* his school.

We ended up going with the key phrases "maybe later" or "maybe tomorrow". They were literally true as sometimes it would be the next day, though they eventually ended up meaning roughly "no", at least as he used them (and yes, he'd turn those phrases on us ;) ).

But he found them much easier to deal with than "no". He'd become aggitated by not go as far and recover faster.

Charlie used to be a really heavy sleeper. He'd have a hard time falling asleep but then he would be out like the proverbial log. He used to never wake during the night. So these (very) early wake ups, and over consecutive days, are unusual. I do think he's coming down with a cold (sniffles) so that could be affecting his sleep, and he's also aware of my parents staying with us. And I do think there is a part of him that wants to wake up and go to school, to make sure he gets there.

When I first saw that photo of Houben with his aide, it was apparent that it was facilitated. How can the untainted veracity of the his messages be tested? If it turns out to be legit in Houben's case, would it make its use in autism less questionable? Because the most important question is whether it makes the individual whose communication is being "assisted" actually a happier and less frustrated person.

We are all frustrated in our communications everyday, unfortunately, especially with the people we want to be closest to. "Does anyone every truly understand and know why another individuals does and say what she or he says?" The impossibility of communication used to torment me. Now it appears as the existential sadness inherent in the human experience. The myth of the Fall of Man and Original Sin's marks becomes an allegory about the separation of men from each other and from the Godhead (if there is one.)

So every child is a mystery to his or her parent. And every loved one presents to us as an opaque screen, with an interiority hidden to our understanding by the inadequacy of language to convey a fixed meaning. Suddenly we are blindly stumbling through graduate seminars in Post-Structuralism rather than growing closer to and more calm in the presence of our loved ones.

Your desire to understand Charlie is so deeply felt and universally felt by those of us who love our children as individuals that we can only admire your bravery in presenting its dilemmas and heartbreak so clearly.

What does Charlie use to express himself most easily? Movement, colors, numbers, building things, ordering things?